sunday

Do you remember your first big roller coaster ride when you were little? Not the dinky one that just kinda goes in a fun little up and down pattern. The BIG one...with the loops and drops and tummy flipping scary fun. How you waited anxiously in line...probably with your maybe a little older/cooler friend that had already ridden this one a gazillion times?

We are on a ride right now for sure. We held hands as we took off for Cleveland...looking at each other (maybe a little excited...but mostly terrified to the core) like is this for real? Are we doing this? Then as each up and down and loop and drop has happened over the 4 days...we have clung to each other...not wanting to look scared...not wanting to act like we are not cool enough to endure this. When the ride was over when you were younger...you were so relieved. It was so fun/awful! Your stomach is still in knots and upside down/inside out....but you DID IT! And your older cooler friend is proud of you.

Right now...God is our older cooler friend. He wants us on this ride. He wants us to see the world from the tippy top of the highest ride in the whole park. He wants us to hold his hand so tightly when we come crashing down from the BIG drop. He wants us to call out his name when we go for the loop. He wants us to know that he is holding on to us so tightly...through every second of this. We HAVE to trust Him and know that his almighty plan is so great. We won't know what all is in store until it is over. But it will end. Someday. We will look back and be thankful that he chose this path for us. We will look back and high five each other on conquering the CRAZY ride we were just brought to. We cant lie and say that it would be way more neat to be standing in line with a cotton candy for the merry go round. We are apprehensive and scared...but still trusting that its gonna be GOOD!

I am so grateful to go on this ride with my sweet Justin. God created women to stand close beside their husbands and lift them up at all times. I have had the opportunity to stand behind him and watch him lead me. Justin is my ultimate hero...I will never tire of praising him. God created him so perfectly. Cute and funny is a major bonus too. Thanks God...You have so always got my back :)

Today was just more tests. More blood work this morning. No test results back on anything yet...from yesterday or today. They were able to rule out cancer in the stomach (and south of that!). There is some liver concern still. They have called in what they refer to as the "liver consultation team"...they did an hour and forty five minute ultrasound on that this afternoon. They came in after lunch and told him he couldnt eat anymore today (SHOOT!!!)...that always makes me scared. BUT just three (long) hours later they came in and got him for the testing. When he got down there they told him "oh, ha! you totally could have eaten." Great.

Please be in prayer for those results.

Justins phone screen shattered today...along with a little piece of his heart ;)

So...that was a bummer.

Speaking of phones...I know some of you are already reading Jesus Calling and I know several of you have just purchased it. So some neato news I just found out today is that there is an iphone app for the book! There is ALSO a childrens version! Joanie and Jerry got this for Bryce when he was Baptized. SO...you can do the same devotional as your kids!! It is so amazing. Did anyone read June 30th? That was the day we got here. God is good.

Please pray for Justin's heart. He is dealing with some frustrations that are just so hard. I want to fix it...but I just can't. He is such a trooper emotionally. We have had time to sit back and look at the perfect little family we have. God pieced the 5 of us together and we thank Him and praise Him for showing us His love through our children and our marriage.

I am hanging in there. Sadder than ever still. Emotionally pretty yuck...but I am still finding time to stay in the word...which is of course the best medicine around. I went down to the gym today again and did some good cardio. I took a nap and had a good cry as I thought about how badly I want to hug and kiss my kids. I never thought I would ever have to be away from this like this. We are working out a plan on how I will see them. Justin does not want them in the hospital room..it is yucky and our neighbor is sick and yucky. I may get to run home and see them for a day or two and then come right back. We are working out the details, but will not make any decisions until Tuesday morning when we start getting more answers and figure out when he will do his chemo and biopsy. I am trusting Gods timing on the perfect way that it will fall into place. I am just such a planner and this is so hard for me.

That is all for now. We hope everyone has a safe and happy 4th of July.

saturday in cleveland

i am too emotional to write anything profound today. i have sat alone in the waiting room and cried a lot today. i have had some very precious prayer time...but still feel like my stomach fell out. and my brain feels twitchy. and my eyeballs hurt from crying.

here is the scoop:

starting now they are testing justin for every kind of cancer there is. starting with the stomach and moving south. he just had to drink some disgusting thing that he is mad about and will head down for more CAT scans sometime soon. does anyone remember that he cant eat before those? Insert potty words.

They will do PET scans also...but we are not sure when. Maybe today...maybe not until Tuesday.

They have confirmed that he for sure has the polymyositis...but now they want to know what else. Polymyositis is not supposed to cause all these other problems.

They will do the EMG...we thought yesterday...but maybe today...maybe monday....maybe tuesday.

AFTER those results...they will determine if they are going to do another muscle biopsy with a larger piece of muscle.

So basically we will be here 100 years.

They will go ahead and do his chemo (rituxan) on monday IF the transfusion center is open...if not...then Tuesday.

They are continuing to find more problems with his liver. They have done some tests that came back positive and they are ordering more tests now.

It's barely noon and I feel like we have run a marathon.

The doctor just told justin that he is the "hot case" on the floor and is a definite priority to everyone here.

Thank you God for bringing us here. I am on my knees daily thanking You. Praising Your name...and maybe still asking why....But all the while...I am trusting.

friday in cleveland

Today we saw about 12 different drs. None of them had answers. They all wanted more tests. They want more information on Justin. He is showing little pieces of lots of different diseases....but none of the dots are connecting right now.

Here are some things we heard today:

Mixed Connective Tissue Disease

Dystrophy

Sclerosis

Cancer

Steroid Myopathy

Hmmm...do any of those sound nice to you?

Not to me.

Still no clear diagnosis.

The CT scan did come back and did not show any progression in his fibrosis. Praise God for that. They will continue to keep an eye on that. His heart is GOOD.

They talked about getting another muscle biopsy. An EMG (i dont know what that is...but they said it will hurt) and they will also probably do his chemo while he is here. Hopefully all of this will take place tomorrow...we thought it would happen today.

This place is so busy...all day doctors walking around...nurses...people everywhere.

Last night I walked back to the hotel and everything was empty. This busy city within a city was completely quiet. They have this creepy arabic disney sounding music that plays down the hallways. I am not sure that I have ever felt that alone in my life. Three different people have asked me if I was here to see my mom or dad. Nope. I am here with my 28 year old husband.

I am thankful for this sweet time with Justin though. I cannot think of any other reason we could get this much quality time. We are making the best of it...thats for sure. He is lucky he is so cute. I love this man so so so much. If you are wondering if he is still being high maintenance with his eating..the answer is YES! Whew! He wears me out!! He eats CONSTANTLY! Thank goodness Melissa told me about the yummy restaurant downstairs.

We are anxious and a little frustrated tonight. Where is the info on the 16 vials of blood they took yesterday? Why have they not redone his biopsy? Yuck...I just dont want him to have to have that done at all. Why does his roommate make such weird noises? Is God teaching us patience? I thought we had that lesson when we had our 3rd kid :)

I miss my little boys.

Bryce and Justin have done their devotional over the phone all 3 days that we have been here. Bryce had too much fun at the river...shooting at deer with a bb gun...collecting tadpoles...kayaking and swimming in the river...teaching his little baby brothers all about the river life!!

I miss Bryce's questions....Brody's giggle and Braxton's chubby smile...BUT I cannot think of anywhere else I would rather be than right here with the love of my life.

A shout out to all of our praying friends. You guys are pretty crazy awesome.

We love all of your guts.

Can't wait to share some good news...I just know it is coming.

thursday

Justin had his first appointment today at noon with the pulmonology/scleroderma specialist. We liked him a lot. He had received all Justin's information...but he asked us to tell his story in our own words. As we were telling him...he stopped us so he could go to his office and get a picture of his family. He too has 3 little boys...under the age of 6...one of them has downs. He said..."wow, God definitely brought us together!"

Um....YEAH HE DID!!

So he ordered a ton of tests and said he would talk to us after we went to the next appointments.

We went to the next appointment (same building just different floor) and two doctors met us there. One Rhematologist and one Scleroderma/Polymyositis/Overlap Syndrome Specialist.

After a few moments of questions...all 3 doctors stood over Justin spouting off medical stuff...for what seemed like forever. They pretty much spoke completely in acronym.

They are concerned with his nailfold capillaries and the way his skin looked.

His muscle weakness is very alarming.

They were all very happy with Dr. F in San Antonio. They were pleased with how aggressive he had been with his treatment. They were very concerned that these treatments had not helped.

They decided he needed to be admitted. They said nothing with his diagnosis was straightforward. They said he was "very complicated". They said they wanted this daddy to get better...but they needed more answers.

Bummer.

We spent a few hours doing tests. He got a CAT scan and Echo and more blood work.

So now we are here...admitted into the Cleveland Clinic Hospital. He has to share a room and bathroom. There is only a small space for me to sit...like a classroom chair. I do not think guests are encouraged to stay long :(

I can say that I am for sure the saddest I have ever been in my life. Is saddest a word?

Either way...I am. And I have dealt with some pretty sad stuff.

Today's Jesus Calling was pretty legit. I very much recommend that you get this book...and read it EVERY day. Go back to the day of June 18th...that is when miracles started happening at our house. Lots of miracles are happening all around us each moment....just the fact the we are here and able to be in the very best care. The most wonderful family that got us here and that is continuing to pray for us. Our kids are taken care of (although I already miss them so so much)...our friends are busy praying and planning...our God is so big. So crazy mighty.

It is great that Justin will have around the clock care...it is great that they are being very proactive in getting to the bottom of this...but I will not lie and say that this is what we hoped for.

We are HERE!

We made it! We had a great flight. It went by extremely fast...we felt everyones prayers for sure. We so appreciated everyones texts as we were taking off!! We watched a few episodes of Modern Family on the way. Hilarious!

Justin was very stiff and sore after the Houston to Cleveland flight and needed to use the wheelchair when we arrived. He took it like a champ and was without a doubt the cutest guy in the airport. He is having some stiffness in his skin on his hands. He took some pictures of that today to show the dr in case they are not flared tomorrow. He continues to have terrible muscle and joint pain and although the pain patch is helping...there is still too much pain. Random swelling continues. He is still taking over 25 different pills a day....please pray that there are some answers tomorrow that will eliminate some of this!!

We were greeted by our driver at baggage and he was super friendly! We felt a little fancy :)

He told us that just a few blocks from our hotel was an area called Little Italy. So...after we got settled in to the hotel (aka after justin rested and ate chocolate donuts and i unpacked us lol) we went over to check it out. We have not been out to eat in awhile... Justin gets little spurts of energy...but he cannot do much. We really took it slow and had such a sweet time together. Little Italy was so neat! Lots of yummy places to eat and funny Italian music and cobblestone streets. The area we are in is very college-y so it was super fun to sit and people watch. Everything is so green...apparently they are not in a drought.

We are all cozy in our hotel now and are excited to get some good rest tonight before the big day tomorrow.

Today while we were just sitting outside in the SEVENTY-TWO degree weather...we just took a moment and kind of laughed as we realized where we really were. We thought God had called us on a mission to Mexico...but we were wrong. His plan was for us to be HERE. We are exactly where He wanted us to be. Our mission has changed....but His plan has not.

We prayed for each person that was fasting for JMac today. We are so thankful....as we know there were many of you.

The boys were so thrilled to go to the river house this morning with my sweet aunts! Bryce is going to get some really good Papa time! So....he won't be missing us quite yet.

We ask that you all continue to pray tomorrow...around 11am Texas time is when we will be in his first appointment.

We love you all!!

Happy Birthday Mom!!

Today is my beautiful mommy's birthday. I wish she was here to celebrate. I wish she was here so we could take her to Joe's Crab Shack and so we could get her some cheesecake and so my kids could hug her neck! I also just wish she was here. Period. I kinda need her right now :(

She was so pretty and full of life. She was really funny and extremely outspoken. She thought Bryce hung the moon and every single star in the sky. I miss her today and everyday. Birthdays may have just been her favorite thing in the whole wide world. And a summer birthday? Can't get much better than that! It is comforting to know that one day...we can celebrate everything together....everyday.

McElhannon Family

I am so beyond pleased with our photo session from last week. Chantel was able to capture the most wonderful photos of my precious family. I love each person in these pictures so much I could just squeeze their guts out!!! THIS is what helps us smile on a yucky day. This is the FAMILY that God blessed us with. He specifically chose me for Justin and these three delightful boys for US. How blessed are we?! Now through this storm we have these precious pictures to remind us that HE is wrapped tightly around us right NOW.

Please enjoy :)

and this one...well because...its hilarious!!

I could have posted 100's...but these are just my faves :)

love you all and keep on prayin'!!

friday

today was a good/not awesome day. the good parts included taking bryce and addie to see cars 2 and having lunch with a friend while justin napped...watching the babies read to justin...finally getting a work out in...getting my fixed car back...sending bryce to swim with his tball friends...getting the MOST AMAZING pictures EVER (i canNOT wait to share them with ya'll)...taking care of my number one man...getting our travel itinerary sent from the most generous family in Boerne...and getting some one on one time with Justin in the afternoon while Katelyn was here.

The not awesome part of they day included his doctors appointment. The muscle biopsy (remember the thing that i almost had a heart attack while they were doing?? he had to be under during that procedure and it broke my heart)...came back showing that there is both muscle inflammation and muscle shrinkage or muscle atrophy (warning...do not google this). Long story short...bad news. They may have to do another muscle biopsy where they would need to take a larger chunk of muscle. I am not sure I could handle that again...and my precious husband? I just cant stand it!!!

The scleroderma is showing up and rearing its ugly head around. Please pray it away. Pray that scleroderma right out of Justin's body. NOW!

His CK levels have not gone up...but they sure have not gone down. Stupid.

His doctor doesn't want to change anything until he gets to Cleveland. He has corresponded with the Cleveland team several times and they are all anxious for Justin to be seen.

Our flight leaves on Wednesday at 11:20am and we will arrive in Cleveland around 5pm. We are so sad about the circumstances...but are looking forward to an adventure together. We truly are best friends and can surely find some way to make this trip fun!!

Please pray for Justin's pain, inflammation, medication side effects and his precious heart during this time. This is the time that he needs to feel more loved than ever...how lucky am I that I get to fill that number one spot?! I am so thankful for our 3 silly as a willy baby boys that make us a complete family. With all the love that is being poured over us right now...I just cant imagine needing anything else in the world!!

thank you for your prayers...and if you are wondering what devotion we do over here right now...we read jesus calling by sarah young. its amazing and continues to speak to our hearts each day. you should get it...then you would always know you are reading the same thing we are :)

(thanks marci!!))

xoxo

the macs

ps:

notice the new fabulous header? thank you chantal bellamy!! i am going to leave that up there for a little while...each person that is visiting this blog is praying for us and thinking of us and loving on us in one way or another...so for now...i want you to be thanked each time you come.

love you all!!

xoxo

Fasting for JMac

Before a critical time of Esters life she prayed and fasted. At this time, she called for others to fast with her. I am not Esther...and I am not going to see a king...BUT I am a daughter to The King and I humbly stand before you all...weary and desperate...and ask you to join in prayer for healing for my precious husband.

There are many different ways to fast...and how you choose to fast is up to you. You need to pray about it and He will provide that answer to you.

I will be fasting for 3 days...Sunday, Monday and Tuesday. Each time I think about food or eating or it is meal time...I will excuse myself to pray and spend time with the Lord...claiming healing for Justin...praying for our trip and his doctors.

Many of you have asked how you can help. I have an idea...but I of course want you to pray about it first. I would like to ask you all to fast on Wednesday. Fasting can mean something different to each of you. You can choose to only eat fruit, you can choose just liquids, you can eliminate meat or maybe this fast will not be about food for you...Maybe you could give up texting for the day or facebook or tv. For ONE DAY...I am asking you to give up something that you typically do several times a day and enjoy. During those times...will you please stop and devote your prayer to Justin?

Fasting is a Godly exercise that brings us closer to Him. Would you be willing to give up some of your favorite things for ONE day...just to intercede for Justin?

Some you may know exactly what you want to pray for that day. You may have scripture ready to look at and a plan of attack already in mind...for those of you who do not...here is a list of specific things to pray for:

1. Justin

2. Misty

3. Bryce

4. Brody

5. Braxton

6. Dr. Chattergee - Systemic Sclerosis (Scleroderma Specialist)

7. Dr. Parambil - Pulmonologist

8. Dr. Calabrese - Rheumatology

9. Dr. Feinstein - Justins SA Rheumatologist

10. The things he has been diagnosed with: Rheumatoid Arthritis, Lupus, Systemic Sclerosis (Scleroderma), Polymyositis and Fibrosis

11. travel - uneventful flights etc.

12. clarity and understanding for us while at the appointments

13. that we do not get lost in a new city

14. my aunt debbie and aunt kay who will have the boys

15. Gods ultimate presence in the room and drs. wisdom

16. quick return home with answers and a plan

17. Justins pain

18. Justins inflammation

19. another answer other than chemo

20. our health insurance

(i may add more to this next week!)

Fasting can be done individually, like we have read that Jesus, Moses and Daniel did; a whole church can be called to fast (Acts 14:23), or a city (Jeremiah 36:9; Jonah 3:5). In times of strife, an army (Judges 20:26) or a whole nation can be called on to fast (2nd Chronicles 20:3). However, unless we are called to collectively fast for a specific purpose, we should fast and pray in secret and tell no one except the Lord Himself. ‘And whenever you are fasting do not look gloomy like the hypocrites do, for they put on a dismal countenance so that their fasting may be seen by men. Truly I say to you, they have their reward in full already. But when you fast, perfume your head and wash your face. So that your fasting may not be noticed by men but by your Father, Who sees you in secret; and your Father Who sees you in secret, will reward you in the open’ (Matthew 6:16 to 18).

Fasting can be used to ask God’s help. ‘So we fasted and besought our God for this, and He heard our entreaty’ (Ezra 8:23).

Fasting is serious business to God and we must not take it lightly. ‘Sanctify a fast, call a solemn assembly, gather the elders ... and cry to the Lord’. ‘Set apart a fast and call a solemn assembly’ (Joel 1:14; 2:15).

Fasting can be used to increase the power of God in our life, so we can serve the Lord more effectively just as Jesus did. He was led out, or driven out by the Holy Spirit into the wilderness (Matthew 4:1; Mark 1:12) and came out of the desert full of the power of the Holy Spirit (Luke 4:14). Jesus did not perform one miracle until after He was baptised in water and had fasted for forty days.

Here are some quick facts about fasting:

• Fasting was an expected discipline in both the Old and New Testament eras. For example, Moses fasted at least two recorded forty-day periods. Jesus fasted 40 days and reminded His followers to fast, "when you fast," not if you fast.
• Fasting and prayer can restore the loss of the "first love" for your Lord and result in a more intimate relationship with Christ.
• Fasting is a biblical way to truly humble yourself in the sight of God (Psalm 35:13; Ezra 8:21). King David said, "I humble myself through fasting."
• Fasting enables the Holy Spirit to reveal your true spiritual condition, resulting in brokenness, repentance, and a transformed life.
• The Holy Spirit will quicken the Word of God in your heart and His truth will become more meaningful to you!
• Fasting can transform your prayer life into a richer and more personal experience.
• Fasting can result in a dynamic personal revival in your own life-and make you a channel of revival to others.
• Fasting and prayer are the only disciplines that fulfill the requirements of II Chronicles 7:14:

thankful

my brain is continuously thinking of all the people i am thankful for right now.
i am thankful for the people that are feeding us! YUMMY! the steroids make justin STARVING and yummy dinner just keeps on showing up! thank you so much for those coordinating that. also, an extra shout out to Justin Hobbs for also passing on his blessing of meals to us.
Thank you to my sweet precious friend that made me the most perfect and snuggly blanket to take to Cleveland!
Thank you to an amazing photographer. A special family that is financially funding this journey. The other amazing families who are contributing to us financially during this crazy time....the two awesome women who set up The McElhannon Fund at Wells Fargo. The friends who stop by with goodies or just to give the boys a high five. The friends who are coordinating things for us and the ones who are texting us really funny hilarious things. There are people praying for us that we do not know. There are people who want to help us along this journey that we dont know. The offers to watch our kids are OVERFLOWING. Either I have some REALLY cute kids...or these people are just AWESOME. I bet its a little of both. God is so present in this situation.
My mom always told me that it was appropriate to write a thank you note for EVERYTHING. And so...I have always done that. I have just really been broken hearted that I have not been able to do that. I have been told by a few people that if I attempted to write a thank you note that they would break my fingers. That would be a total bummer. It is so hard to let go of that...because I want to thank each person. Justin wants to thank each person. I do not think there is enough thank you notes in the world.

This is tough for me...I am a giver. Its weird to be on the other side of things.

Romans 12:13 says:

When God's people are in need, be ready to help them. Always be eager to practice hospitality.

I feel that I have always tried to live out that verse. I see God returning that blessing to us tenfold. I often feel undeserving.

God calls us to fill in the gap and spread the word of the gospel. We are to always honor Him and His timing. I pray that someone will see our story and see how God has so wonderfully carried us through this time and seek Him. I pray that we can fill that gap and bring people closer to Him. We have had many experiences over the past 7 years as a couple that have given us the opportunity to lean on Him. (Justin has come such a long way!!) We have done that each time...and He has never let us down. Once again we rely fully on our Savior...and what do you know...he continues to provide hope and peace and hundreds of people to be THANKFUL for.

We serve a mighty God. Like...big time.

Cleveland

Ok everyone...We have a date for Cleveland. It is not really when I wanted to to be. But...it is what it is.
We will leave NEXT Wednesday the 29th. He has 3 appointments set with 3 different specialists on the 30th. It was a pretty HUGE ordeal to coordinate with 3 top specialists offices to find ONE day for them to see him. At first they told us end of July. NOPE. Then they told us that we could go ahead and come if we thought it was an emergency...but we couldn't be guaranteed to see these specific doctors. These 3 specific drs are the top in their specialties. One for scleroderma, one for polymyositis and a pulmonologist for the fibrosis they found. I am disappointed that we are not going sooner...but can see that God's perfect timing made these unavailable appointments happen.
In the meantime we need to continue praying that the pain patch will work. He said today that he feels like it has taken some of the soreness away. Each day he dreads waking up and feeling what will hurt. His elbows, legs, arms, face and backside always hurt. Something new is swollen each day too. Today he woke up and the bottom of his feet are so extremely tender. Can you imagine? I just cannot. I just want it to all go away. An amazing friend from our Sunday School class offered to take our family portraits today. That sounded HORRIBLE to Justin...but he knows that it is important and something that we needed to do. He was such a good sport. I could tell he felt awful...but she made it super quick and kept him off his feet as much as possible. And did I mention...she drove four hours to do this for us? We are so blessed and thankful. The owner of Toyota of Boerne so kindly offered up his gorgeous home for us to do the shoot. It was VERY last minute (like we may have just figured this all out yesterday), but it was perfect and cool and comfortable to Justin (and um...lots prettier than our house).
My precious aunts and dad are on standby and ready to come watch this wild pack of boys we have. I know they will be in great hands and I know there are lots of others that will be waiting in the wings...ready to help when needed!!
For now, the doctors office seemed under the impression that Justin would not be there long. He would come in as an outpatient...see the specialists and get a new plan. We have all his medical records, most recent bloodwork, biopsy results and on and on...and will take all of that with us on a disk.
Pray that the chemo and ivig will continue to attack the yucky cells in his body and leave the good ones alone.
Justin is going to get better in Cleveland. I am pretty excited about telling that story when it happens :)

being patient

We heard from Cleveland Clinic today!! We will not have a firm appointment date/time until tomorrow morning...but we KNOW we are going! It was a hectic day as we made and received calls and talked with insurance and waited and watched our phones. We heard from them twice today AND our insurance company is already working with them!
Clearly, God has a specific plan for us to go to Cleveland...so we are just going to trust His timing.
As Justins CK levels are continuously going up and his pain never decreases...we are hopeful to travel ASAP! We want to get going before he begins to feel worse. The most amazing family has our travel arrangements completely handled. Two other families have offered to help as well and will help us get the kids up there if we need to be there longer than just a few days. I am just once again...blown away. Justin and I prayed today that one day we would be able to help a family in such a tremendous way.
I picked up Justin's pain patch today...please pray that it will work!! It was VERY expensive...but God provided the money for that too.
Leaving the hospital yesterday was a nightmare. It took four hours to get discharged. He was so so ready to get home and be with his babies. Dr. F came in and said "I have thrown the kitchen sink at you and now its time to go home and wait for Cleveland to get you in"....The hospitalist, Dr. Anumula, asked that we please email him with updates on Justin's case. He said that he had no more options on how to treat Justin and would love to learn from his case.
Seriously.
He is a medical mystery. I am so sad that his body has to feel this pain and have this disease in it. I hate that my handsome husband had to have chemo running through his veins. I hate that he hurts. It breaks my heart every day. I dont understand why none of the treatments have worked.
There are going to be answers in Cleveland. I can't wait.
On a side note...I went to Target today to get Justin a new pillow and when the baby and I went to get back in the car...it wouldnt start. Toyota of Boerne totally came through and handled it and got me home...but I dont have my car and that just stinks. I am ready for a day where nothing happens. A boring day would be good.
Please pray for the kids during this crazy time. We are doing our best to keep them in their regular routine. They sure were happy to go to all be together yesterday and today...their little faces never stopped smiling!!
Thanks for keeping up with us and thanks for your prayers.
Hopefully I can update you tomorrow with our travel plans!!

rainbows all around

the chemo was awful. it made him feel flu like and weird. thankfully, it is over now. he got his morphine...and guess what? he is hungry. :) this has been one crazy week. it comes to an end tomorrow. justin will be discharged in the morning. happy fathers day to him!!

he is going to get a pain patch (hopefully tonight) that he will wear full time. pray that it works! the dr is very confident that it will. its expensive...but we dont care.

we have been here a week. 38 different people came to see justin. 10 different people have watched our kids. 5 different people have cooked for us. 2 have gone grocery shopping. thousands have prayed. countless people have loved on us during this time. my email box, facebook messages and text inbox have exploded. many have not been formally thanked...but i know that is OK...because they are doing God's work.

pray that our next journey starts quickly. God is getting EVERY bit of the GLORY on this. EVERY. SINGLE.BIT. His timing will be perfect.

Did I ever mention that while Justin is lying in this bed in agonizing pain..he has done 2 weeks worth of homework...wrote a 4 page paper...took a 40 question mid term and a 2 other quizzes.

Who is this man?

I love him.

Watch out Cleveland...here we come!!

(the chemo)

Here are a few other random pics from the week...

Braxton's broken head...8 staples....he took it like a man!!

The first two days I didnt see my little babies at all. When I came home...they followed me everywhere...even to the bathroom. TMI? Oh well. Its cute.

Sweet precious time with my guys when I got home one night.

Toder got to see Daddy!! (and eat his snacks lol)

Brody is pretty excited about the dinner that people are bringing us. He goes and gets a plate when people knock on the door around 5pm.

Best preschool teachers in the WORLD made this for Justin's room.

Blue feet are Bryce's, Green feet are Brody's and Red feet are Braxton's.

Ezekiel 1:28

The Message (MSG)

^25-28 And then, as they stood with folded wings, there was a voice from above the dome over their heads. Above the dome there was something that looked like a throne, sky-blue like a sapphire, with a humanlike figure towering above the throne. From what I could see, from the waist up he looked like burnished bronze and from the waist down like a blazing fire. Brightness everywhere! The way a rainbow springs out of the sky on a rainy day—that's what it was like. It turned out to be the Glory of God!

miracle on mcelhannon street

miracles are real.
ready to hear why?
friday was loooong. actually sunday, monday, tuesday, wednesday and thursday were long too.
but friday was like WAY long. it felt that we were just dragging through the trenches. lost a little. still being led by an incredible doctor...but reaching his max.
last night i left the hospital feeling sad and anxious. i knew that we still had options ahead...but they just didnt FEEL right.
i really didnt feel like talking to anyone.
i just wanted to come home and snuggle with my babies and go to bed.
i got a call from a friend of friend. let me just tell you that everybodys friend of a friend has something they want to tell us...so i wasnt super pumped about answering the phone. i almost didnt.
this sweet girl called to tell me how she had been healed at cleveland clinic...she told me her story of her specific disease and how they had tried everything here and finally she found the right treatment and answers within 3 days at cleveland clinic. she told me her family would help us get there and that God had made it VERY evident to me that she HAD to tell me about cleveland clinic.
i immediately felt overwhelmed. there was no way i could convince justin to go to cleveland clinic when his dr (that he trusts so much) had mentioned Houston.
i mentioned the call to justin...we prayed and went to sleep.
first thing this morning...dr f came in. they called me on speaker and...get ready...
dr. f had been on the phone ALL day trying to find the perfect place to send justin. he worked with the on staff rheumatologist at UTSA to research and make calls. they immediately ruled out anywhere in texas.
guess what he said...
"i have found the father of all doctors that wants to treat you...he is an expert in these diseases....he is at the CLEVELAND CLINIC"
yes.
that just happened.
SO FRIENDS....WE ARE GOING TO CLEVELAND!!!
we are not sure quite when...but it will be very soon. we are working on this through a weekend...so we may not have answers until monday or tuesday. however...this is GODS PLAN FOR SURE. so we are more confident than ever that HE will make it perfectly clear when it is time for us to go.
wow. can i get an amen on this one?
if you have never seen a miracle...well you have now.
we have never given up that the Lord would provide. He did.

one smaller miracle for the day is: it was really hard for me to think of a fathers day present for a person that is in the hospital. what do you get the best daddy in the world that love to exercise and play golf and do outdoor things...but he cant do any of those things right now?
i thought hard about what his most favorite thing is....and i realized that it is getting a haircut. he has VERY special treatment at Salon Infusion in Boerne. they love him. a LOT. so what happened you say?! they came all the way to his hospital with all his favorite products and gave him the haircut of his life!! i wanted to bless my sweet precious husband...and I did!!! i have never seen him smile like that. so THANK YOU to salon infusion. if you dont go there...maybe you should.

yesterday was rough for other reasons. his levels kept going up...they did today again too. he had to go under for his muscle biopsy yesterday. i have never felt so scared in all my life. we should hear about that this week.
i felt like i was out of body yesterday. just sad and scared.
we wil still start rituxan today. pray that he will have ZERO side affects and only the good effects. pray that this will make him feel better until we get to cleveland. please stop and pray over this trip now. God knows the details...we will let you know when they get sorted out.

is it already friday??

today when we spoke with the doctor we got lots of news.
ck levels back up. over 2,000 again.
NOT SUPPOSED TO HAPPEN.
he is concerned that none of the treatments have worked.
we are doing a muscle biopsy this afternoon. he wants to check out some other things.
dr. f said its time to bring on the big dogs. this is serious business.
he is contacting a dr in houston today.
(side note...justin cannot eat before the biopsy...those of you close to this situation know exactly how important food is to him right now....stop and pray that they do it SOON)
he will start a treatment called rituxan today.
this medication is $5,000 a treatment. He will take 2 treatments a month every 6 months.
STOP NOW. Pray that insurance will cover this. Pray that I am able to negotiate with them.
Pray that the portion they cover will be sufficient. I am confident that God's got that.
He will take that by IV...probably starting today.
the side effects are extreme. but...the dr said at this point...the risk is worth it.
the ivig is in his system and will hopefully start to kick in more over the next 12 days.
he will not get biopsy results for up to 10 days.
stop and pray that the results will be favorable.
pray that the dr in houston will be able to get him in quickly or will have some answers or...something.
i dont even know.

continue to pray for bryce, brody and braxton.
they have been extremely loved on and i have been able to spend some good time with them....but i miss them terribly. i wish they could have their normal life back. mommy taking care of them and daddy coming home to wrestle them and tickle them after work everyday.

justin is desperate for normalcy. he wants to go home. he REALLY wants to go to work.

when will this all end? when will have good news? when can we rest at home in peace with our precious babies?

Proverbs 3:5-6
Trust in the Lord with all your heart;
do not depend on your own understanding.
Seek his will in all you do,
and he will show you which path to take.

Father we cry out to you!! We glorify your plan for our life each day. We come before you God and pray for grace and understanding. Lord we beg for wisdom, discernment and peace. We pray for healing God...complete healing. Never leave our side Lord...we are leaning on you during this time. All the way. Help reassure us of your presence in our times of weakness. We have seen you at work God and we are amazed. Simply amazed. We command satan OUT of times of weariness. Lord we praise your name each day for the blessings....we thank you for the place we are right now...but Father we just dont understand. It is in your holy name that we pray.

discouraged

yesterday was more pain. lots more pain.
something yucky started happening with his wrist before the ivig yesterday. it became red and swollen and tender.
this morning that same thing started happening to his thighs.
they finally came in and did an MRI...it just showed more muscle inflammation. that was extremely discouraging.
the reason that is so discouraging is because the medications he has been taking intravenously for 5 days are specifically for inflammation and pain....so they are not working one bit.
plan A, B, C and D have not worked...we are surely hoping for a good plan E tomorrow.
emotions are at an all time high right now. justin is not interested in people feeling sorry for him. encouragement and prayer and friendship are what is keeping him going...sympathy is frustrating him.
we are beyond exhausted and even more frustrated.
please pray for a good plan tomorrow.
we really are ready for some good news. like...REALLY ready.
he is still in horrible pain.

my sweet friends made a big basket of goodies for the nurses...hopefully this will bribe them to atleast do their jobs.
some other sweet friends had the boys make an awesome banner with little feet prints and a verse. i wish i had the energy to post pictures. we have had 30 different visitors...some crazy good food...and some serious prayers.
even with the yucky news....we are still able to see some amazing things happening. crazy amazing. god is at work.

fear not, for i have summoned you by name; you are MINE. when you pass through the waters. i will be with you. when you pass through the rivers, they will not sweep over you. when you walk through the fire, you will not be burned. the flames will not set you ablaze. for i am the lord your god...the holy spirit of israel.
isaiah 42:2-3

Wednesday

This morning Dr F told us what we already knew... Justin is not getting any better.
So... We started the blood antibody transfusion (ivig). It's pretty gross... But the Dr is confident this will help.
His pain has not minimized at all. His legs and arms are the worst. He is on tons of pain medication... Morphine, norco, something for nerve pain... Nothing helps :(
Can you imagine? It's extremely frustrating for him. The IV solumedrol was supposed to reduce the inflammation... But it didn't.
He still has a positive attitude and he still sees that God is at work... Although he is definitely having more and more moments of weakness.
He has been just as in awe as I have at the way our friends have rallied together to be the hands and feet of Jesus. We have had so many wonderful visitors from far and farther (I would say near and far... But NOTHING is near to us).
Our babies are good! Justin is thrilled that some great friends brought Brody up here to see him! He has now got to see all his boys... Which is such good medicine for him.
Braxton is pretending like nothing ever happened to his head... Doesn't bother him a bit!!
Thankfully, we have our precious sitter Katelyn at the house now... So all is good in the world!!
The IVIG will take 3 or 4 days... So we will be here.
We are tired. Exhausted. Burnt out on this place.
Current prayer request:
Justins pain to stop
He now has something terrible happening to his wrist. It's swollen and black and hurting badly.

Thank you all for loving us and sharing in this journey with us.

maybe our worst day??

today started with dr. f coming in at 6:45 am. he gave us a game plan...1000 mg of steroids today, tomorrow and wednesday. wednesday afternoon they will decide if they are going to do an IVIG....which is basically a blood antibody transfusion.

so far his pain has not decreased.

dr. f ordered a ct scan on his lungs and an mri on his legs.

we have not received mri results yet...but we did get ct scan results back.

they were not good.

they found debri called fibrosis.

not good.

this is what we have NOT wanted to hear since day one of diagnosis.

dr. f will come in the morning and talk to us about that. hopefully then we will go over the mri results.

also today while that was happening...our sweet baby braxton fell down and had to get 8 staples on his head. my friends who had him immediately took him to our doctor/family friend who got him taken care of. i am not sure who was more upset about all that...but i am pretty sure it was my precious friends who were watching him. i have 3 boys...so i guess things like this are just going to be a part of our lives!

so...today was...maybe our worst day?

it was pretty awful and thats a fact.

one thing is for sure...braxton is FINE. i went straight to see him and he was running and laughing an playing and now has a fancy scar like his big brother brody.

please pray for justins lungs. please pray for the steroids to work...they are not yet.

i am extremely overwhelmed and sad and tired and scared.

i dont know much else...but i do know that Gods presence is SO obvious. i dont have a clue what He has in store for us...but we know He's got this. this is not our burden to carry.

we are loved on...our kids are loved on. our fridge is being loved on. our laundry is done. once again...God is good. like...crazy good.

oh and Bryce is here. he is not scared one bit. he got to go to target and pick his daddy out a prize to bring...he chose connect4. (thanks katie for the idea!) he is excited about all the jink food that is in this room. :)

not our worst day

today was not our best day...but its not our worst. we have some very yucky stuff going on...but we are so surrounded with God's love and amazing people that it just cannot be our worst day.

justin was admitted into the hospital today. his pain was out of control...again.

his dr wants to get the polymyositis under control immediately...its wreaking havoc on his body right now.

we have been so covered in love since 7am this morning its just literally unbelievable.

if you have one of our kids, or have brought us tea or coffee or snacks or lunch...or prayed for us or over us...or have brought us things or called or texted or emailed...or signed up for a meal...or just chatted with us....then we are over the moon thankful.

you are all the hands and feet of jesus. you all are wonderful.

today the dr just has justin comfortable on pain meds. he has him on stronger steroids...and when he gets here in the morning we will get a plan of action going.

current prayer requests:

answers and clarification when the dr arrives in the morning.

wisdom for when we talk to bryce about this tomorrow.

peace and comfort at all the homes our kids are at.

less pain.

this polymyositis to stop dead in its tracks...so we can then focus on the systemic sclerosis.

rest. (ok ok that may be too much to ask!)

I am staying at the hospital with justin tonight. We should be here awhile...I will keep you posted.

Thanks for everything friends.

xoxo